Monday, January 31, 2011

One thing that my twins with Down Syndrome and Autism do on a daily basis is stim.. Stimming is a word that I was not familiar with before having my boys. Now its a daily word. I still find it "cute" hearing the boys in unison humming and dangling things at the same time. I caught a minute of it on video to share this morning. This often times calms the boys and gets them ready for their full day of school ahead of them. We try not to encourage this out in the public but sometimes it doesn't work. The boys often like making themselves heard like this during church. At first we were nervous about it, but my church family has embraced the boys and say they love hearing them sing :)

Friday, January 28, 2011

Today as I was running around trying to get everything ready to head out the door for our weekly outpatient Speech Therapy and Occupational Therapy sessions, I noticed that the house seemed awful quite for having 5 year old twins on the loose.. This makes me nervous!! I give a quick look around the "usual spots" and I didn't see them. I head towards their bedroom to find a closed door... uh oh, this is usually never good.....

I was pleasantly surprised and impressed to see this:

What a happy mama I am :o)

As the morning went on I had several things on my plate to take care of. One that I am glad to finally have off my shoulders was making the FINAL DECISION to NOT send them to kindergarten this year. We have been praying about this and seeking advice from other parents, providers, and educators. Many of them suggested we send them. Many of them said ultimately its our decision. And some said its a tough decision and one they would not have an answer for.

The boys turned 5 in October of 2010. They are eligible to begin kindergarten in the Fall 2010 session. They are doing so many wonderful things that I feel makes them entirely ready. Writing their names, drawing stick figures, identifying all the letters in the alphabet, reading more than 50 words, signing over 300 words, identifying colors, shapes, and finally playing appropriately with toys and other kids.

What they do not have is verbal communication. This is the biggest reason we have decided to keep them home with us another year. I'm not saying that in this year we will have verbal communication, but I am saying that the intensive Speech Therapy we have them in seems to be doing something. We started in September with a new speech therapist who uses Prompt Therapy. She is physically moving their faces according to the sounds she wants to see come out of them and they are responding. There are no words yet, but we have heard many many new sounds out of them and it seems as though they are aware that they are sounding different. They are saying PaPa to Tom's dad.. They ask for bubbles by saying BaBa. And Caleb plays a game that he puts us to sleep and the only way we wake up is by him saying UP. Its small but in our books its BIG that they are making sounds.

Another point that really helped make up our decision was the fact that if they were typical children, they would just be entering into kindergarten this year due to their October birthday. So since they are obviously delayed, why not delay their entry into school as well. The outpatient therapies we are currently receiving far out weigh what we feel they will get out of the first year of school. Once they are in a full day school schedule I will no longer be able to transport them to the Punxsutawney Hospital for therapy.

It feels like a huge weight off my shoulders.. Should We? Should we not?.. as of today its official We Are Not. ahhhhhhhhhhhhhhhhhhh

Thursday, January 27, 2011

Nothing makes a bigger smile on this mama's face when she wakes up before 6am to find such a precious sight. Some days these boys do nothing but fight and I try my hardest to keep them apart... Then there are some days that they just love each other so much that it melts my heart from the inside out. This is what I found this morning when I checked in on them:

Friday, January 14, 2011

Several things have been going on with the twins lately. Almost to many things for me to even process how to proceed. They were seen in November by ENT to review a sleep study we had done. Both boys have been found to have a mild sleep apnea. Isaac's sleep apnea is obstructive apnea due to very large tonsiles. Caleb's apnea is central apnea. We are to follow up with the sleep study doctor for a second opinion on getting their tonsils out now or holding off. Also at that time both boys have had enough ear infections for the year to qualify for tubes. The ENT (who I love!) decided that since Caleb was due to go under anesthesia for dental work, he would go ahead and coordinate tubes and teeth and give Caleb another set of ear tubes. Isaac on the other hand, he felt the risk of putting him under outweighed him having another set of tubes right now. Fast forward two months and the poor bugger has had fluid on his ears since early December. He's had two major ear infections, been on antibiotics once, two shots of rocephin and one ER trip.

Part 2. We visited the eye doctor in early December. At that time we were surprised to hear that the eye doctor has seen some optic nerve damage on both boys right eyes. The twins have been experiencing some new self injurious behaviours lately. They are poking their eyeballs... literally fingers in eye sockets kinda eye poking. The eye doctor said that it was important that we get glasses back on the boys and perhaps that would prevent them from poking as much. Their perscription had changed so much from our last appointment and she felt that was why they were throwing their glasses off again after finally getting them to keep them on all the time. She was right!! We have had glasses again for about three weeks and we are gradually building up the boys wearing them more and more and the eye poking has pretty much stopped. BEFORE the eye poking another sensory issue we have had with both boys is head banging. The kind of head banging that would send a mom running to see if their child knocked themselves out cold from the hit. Isaac will run from a 6 foot distance directly into the wall forehead first and knock himself back on his can. Rarely does he cry. Its like he's getting something out of it other than pain?? The eye doctor listened to this and also was concerned that maybe the headbanging could have resulted in the optic nerve damage so we are set for a sedated MRI to look at their brain and their eyes. It was originally scheduled for next week, January 20th, but the scheduler overlooked something and double booked the boys. The MRI has now been rescheduled for February 4th.

When I had the MRI department on the phone I had asked them if since Isaac was being sedated for the MRI is there anyway an ENT could come and put tubes in his ears. They said that the MRI room was not a sterile room and that would not be possible. So ok, I accepted that and figured Oh Well at least I TRIED.

Now this week Isaac has been head banging quadruple time.. No exaggeration.. if I were to count how many times a day right now we would be over 100. Ever piece of furniture he walks past, dining room chairs, rocking chair, computer desk.. he bangs his head off of it. When frustration sets in he runs for the nearest hard thing to ram his head into.. the kitchen cabinets, the wall, the bedroom door... and as a result this week he has a bruise on his forehead. Rarely does he do this so much that it creates a bruise. Its a small bruise, but a bruise no less. After speaking to his Autism behavioural specialist today and brainstorming, I think that its become a running pattern when his ears are bothering him. Last Saturday we had him to the ER and we were told that he has a double ear infection. He got a shot of antibiotics and we were sent on our way. I was supposed to go back to pediatrician this week to have them checked again BUT they had a stomach virus going on and I was not about to goto the doctors office and share our germs to get any more. He is due to go back next week for a re-check from the last infection that did not clear up...so I'm holding off for now.

Today I got it in my mind that I think Isaac's headbanging is to the point of causing him harm. I think that its time for another set of tubes and I was going to figure out how to get it done. I called the ENT. I explained the situation, I explained that he is due to come to Children's for an MRI and I was wondering if they could sedate him in the OR, put in the tubes and then wheel him down to MRI department to do what they need to do there. The doctor said that would be fine with him as long as we can coordinate schedules with MRI department. WOW!! Glad I thought of it :)

So I am waiting for the MRI coordinator to call me back, but its looking good that we can get this done. I love when I feel like I am truly advocating for my children in a positive way. So as it goes right now.... Caleb will go for dental work and ear tubes on February 1st, then go again on February 4th for his MRI. Isaac will hopefully be getting tubes and then his MRI on the 4th right after his brother. Two trips to Pittsburgh in four days and I sure hope this solves some questions we have about the boys, both with the head banging and the optic nerve damage.

For those that don't know that my husband is a partner at a CPA firm, this is a hard time for us as his work schedule is so very busy. He is so wonderful about putting the boys and all their Pittsburgh trips first and he does so without complaining even though I think that his office may frown upon him missing work during prime season. (Doesn't happen often) Let's hope these two trips will be our last until April, but I'm thinking... follow up appointments may be required for both of them. Hoping for the best outcome in both situations :)

Tuesday, January 11, 2011

Last night before 5pm the boys fells asleep for what I thought might be a long nap. By 9pm I knew that Tom and I were playing with fire letting them sleep, but with the past weeks illness I figured they needed the sleep. I thought for sure we would be up and playing at 2 am.. Isaac awoke at 3am asking for a drink and again I thought for sure this was it, we were up for the day. I coaxed him to lay a little longer and within a few minutes he was sound asleep again. They slept until 6:30am this morning when they heard daddy up and around getting ready for work. Today was a total 180 from the previous 6 days. They were running around, they ate breakfast, they were watching their favorite videos, asking for crackers and cookies, and fighting over toys again.. ahhhhh, to have healthy kids.

At one point they were in their playroom watching Barney and they had the giggles like I've never heard before. Just kept giggling and giggling and giggling. I couldn't help it but to join them and of course, grab my camera.

I couldn't pick out my favorite and be sure to notice Isaac gave a good shot of his tonsils in a few photos...LOL

Oh Happy Day to have my boys smiling like this again. One day shy of a week of sickness, is to much for this mama!! And as Caleb is unwinding an entire roll of toilet tissue, I'm happy to have the energy back as well..

Sunday, January 9, 2011

After four days of trying everything to get the boys to eat. After days of throwing up and fussy boys, we took them to the ER yesterda. It was confirmed that both boys have double ear infections and some kind of intestinal bug. This is the third round of ear infections since November. Caleb is about to get some relief on February 1st he is going to Children's for dental work and ear tubes. This is only his second set of tubes, but I sure hope this gives him some relief. Isaac on the other hand is not so lucky just yet. They want to see if they can just treat his ear infections for a few more months with rocefin when needed. The ENT does not feel the risk of putting him to sleep is enough right now just for ear tubes.

However, on February 4th both boys are being put to sleep for a MRI of their brain and eyes, I wish there was some way to get Isaac tubes then.. I may have to make a phone call about this and see if this is a possibility. I believe these procedures are done in separate areas of the hospital. The ear tubes would have to be put in at the OR department and the MRI in the x-ray department.. Has anyone ever had any experience with this happening? Is it worth me asking? I know that they said the boys will both be sedated for 1 1/2 hours for the MRI, whats a few more minutes for tubes?

Here is a precious photo of the boys napping this week.. They did alot of this:

Tuesday, January 4, 2011

Christmas 2010 has come and gone. The twins enjoyed things more this year than before. They still do not really comprehend that there is something fun waiting for them behind the wrapping paper and have no interest in opening their gifts. This year I wrapped a few things, but the majority of things I just put into a gift bag for them. Due to the fact that the older three children were so very excited about Christmas this year and woke us up by 5am, the twins were totally not in the mood to even participate in the gift opening with us at that time.

I have so many fun photos to share, but the twins and their $2 Buzz Lightyear Phones really gave me a kick. They always see everyone texting on their phones and it was like they were sitting there sending each other messages. One would push buttons and laugh, then the other would push buttons and laugh.. they sure know how to make a mama laugh.

Isaac loved his sock monkey:

Caleb loved to Dance with Just Dance on the Wii with his siblings and cousins:

Camille was adorable in her new hat and scarf:

Elijah was super excited and very animated about getting his Beyblades Wii game: